Thursday, December 22, 2011

Forgetting Me

'Tis the season to think about our ancestral homes and aging relatives. Not that I don't think about them at other times, but in the past few weeks I have been mailing packages and cards and such to various relatives who live in or near the place where I grew up, far from where I live now.

My similarly-aged colleagues and I are at the point where, when we meet at conferences or elsewhere and the topic turns to Life, Family etc., a common element of the conversation is the declining health (or, in some cases, the decease) of parents. In recent years, on more than one occasion, collaborative research and planned research visits have been postponed owing to a colleague's parental health crisis.

With time, I am sure more and more of us will be talking about and dealing with our own declining health, but for now, many of us are focused on our parents. Because most of us are academics who took whatever jobs were available, wherever those happened to be, most of us do not live geographically close to our ailing parents, adding another challenge to the situation.

As I am writing this (a few days before I will post it), it is my mother's birthday. She is physically very healthy, but, as I have mentioned in a few posts over the years, she has long been showing signs of some sort of dementia. I started noticing it quite a while ago, and, not surprisingly, the signs have gotten more obvious over the years.

Years ago, when it was clear to me that she was not going to mention her symptoms to her doctor, I talked to him. Instead of taking my concerns seriously, he was offended. He told me that (1) he is such an excellent physician that he would not miss signs of a problem, even if they were subtle, so who was I to tell him that she had a problem?, and (2) if I really cared about my mother, I would quit my job and move closer to her. This was a disturbing conversation, but my mother would not listen to a single word of criticism about her awesome physician.

Later, when the signs were impossible to ignore and I kept insisting that she talk to her doctor (the same doctor that I talked to), she finally did. He did some tests and prescribed Aricept.

She isn't going to get 'better', of course. And for now, she is enjoying life, despite having to stop doing some activities that previously were a major feature of her days. She can't process a lot of new information or complex ideas or concepts, and this also makes it difficult to have a conversation with her. For example, we can talk about liking or not liking a book or movie, but we can't discuss what about them we liked or disliked. To her, something is either "wonderful" or "dreadful", and there isn't really anything in between.

She can no longer keep track of new details of my life -- career milestones, travels, even my health. She asks the same questions over and over, tells the same stories over and over. She remembers little incidents from years ago and forgets major recent events. For now, this is all still in the realm of manageable, and just requires a lot of patience by those around her.

One of the strangest aspects (for me) is that she seems to be forgetting some aspects of who I am. That is, she still clearly remembers major facts that have not changed recently -- my name, where I live etc. -- but she seems to remember me as a different kind of person than I think I am.

To explain with an example: I have always loved to travel and I have always loved having adventures. My brother does not like either. He has to do some travel for work, but mostly he stays home, and that is what he prefers. This is not something we each developed as adults; these are traits that have been apparent since we were children. And yet, my mother 'remembers' that my brother is the adventurous one and I am not. When I tell her about some place I have been or something I have done, she gasps and says "But that's not like you! It's your brother who does things like that." Well, no, actually he doesn't. I do. There is no way to convince her of this. And then she forgets it all anyway and doesn't even remember that I went anywhere or did anything in particular, until the next time, when she is surprised again. It doesn't help to send her photographs or detailed descriptions; new information that she can't absorb just goes away.

That is a benign example. It doesn't really matter if she thinks my brother is adventurous and I am not, but other examples cut a bit closer to the heart in terms of who we are and who we have been to our mother. This, too, will never get 'better'. 

What is she remembering and what is she forgetting? Is she making things up out of nothing? Are her memories rooted in the way she thinks people should be? How she wishes we were? Or is it all random, dependent on physical and chemical changes in her brain, not anything related to her real thoughts and memories? In most examples of her 'remembering' things as they aren't, I don't fare too well in terms of her perceptions of my personality, interests, and past actions. Where does that come from?

This year, as I selected gifts for her for her birthday and Christmas, I thought constantly about the state of her mind, as there are some gifts, including some books, that she would no longer enjoy. We used to exchange joke gifts, but now these just confuse her. She actually can't keep track anymore of who gives her what gift (this has been the case for the last few years), so I select things with the general hope that she will like them, even if she won't know who gave them to her a few minutes after she receives them.

Sorry if this post is a bit of a downer at a time when most academic types are decompressing and hoping to have a relaxing week or two with family and friends. I plan to enjoy the next few weeks as well, but I would like to extend a wish for peace, patience, and support to those facing similar issues with parents, relatives, or friends.


Long Tim Reader said...

This post is not a downer at all!
I am sorry that you have to see your mother like this. I am going through the same thing with my grandparents right now and I can tell it is infinitely more difficult for may parents than it is for me. They are your parents, after all. As difficult and as sad as it is, at the same time it is also strangely intriguing and you put it very well: There is so much going on in their brain, it is a mystery where it all comes from. I always thought dementia would be a steady decline, but it is more of a neuronal roller coaster ride with as much imaginary gain as there is loss of function. Take care and just enjoy the time you have together,

Ninotschka said...

Sorry about that, FSP. I wonder fi I would be patient enough to deal with those things. I'm a grad student and my mother is still in her early 60s, but I'm worried about her developing dementia in the future. She hasn't been challenging herself cognitively for decades (was a housewife since the early 80s, very little contact with the outside world, never reading anything, etc - she doesn't even go out of house for grocery shopping since she can't drive) and I feel all this sitting in front of the tv watching the same old shows is taking its toll on her. She says that her memory has always been poor, but I think that her life choices have done nothing to improve this. We'll see.

Anonymous said...

I'm sorry about your mother, FSP. I've never had to deal with dementia in my family (touch wood), but it's sounds very scary and very sad. My prayers are with you and your mother.

Anne-Sophie: I don't know much about this, but I'm not sure that dementia is more likely with a sedentary intellectual life than otherwise. As in, I've seen counterexamples in both directions, though that doesn't mean much.

Anonymous said...

I just peeked in to your blog and it is even more relevant than usual. Just found out in the wee hours that my father is in ICU after a few weeks of failing kidneys and various crises. It looks like I will be flying cross country instead of spending time with my kids, who have flown across country to be with us for Christmas. It's a complicated time of life. It would be easier if I had a "job-ette" instead of a career. Hang in there, FSP - Calypte

Anonymous said...

your post really hit home, your descriptions are all so sadly familiar.

Prof-like Substance said...

Sorry to hear this, FSP. It is disorienting and heartbreaking to see someone you have known for so long slowly slip away.

Anonymous said...

I went through something similar with my grandmother, who raised me. It requires so much patience and maturity on the part of the still-able-minded to not become mad at the person, which you express so well here and which I'm afraid I lacked in my teens and early twenties. I believe I read a nyt piece a few years ago by a dementia researcher with the headline "my mother has alzheimers and I don't care" - expressing the feeling that at this stage of his mothers illness it was easier, and necessary, to think of her as another person he didn't care as much about.

The twist on my grandmother's case was she was herself a respected MD - in the beginning she insisted that she would know if she were starting to lose it! My grandfather, also an MD, definitely knew, but I think he knew there wasn't much to be done without losing her to a home.

Anonymous said...

Wow, you are a wonderful example. I struggle with the family perception issues i.e., my brother being the hardworking one etc. - this arises not so much from dementia as inattention and distance. It's hard to not really be known by your family members. You provide a great example of how to approach this with grace. Thank you

Anonymous said...

My father has been showing signs of dementia for some time. When I reflect on the character of my father as I knew him to be a bright, intelligent, driven man who was always in control of things, I can only imagine that this disease must be a living hell for him. He must be faced with moments when he doesn't know where he is, why he is doing something, to whom he is speaking (happens frequently on our phone calls) or what is the topic of conversation. Reading was always a passion for him but now he struggles to follow the various story lines.

I heard about a son who admitted that his mother as he knew her was gone and he handled it by learning to love "this lovely little lady"-the woman in the body of his mother but who mind and personality was completely different. I have also heard dementia described as the brain is in a state of unlearning rather than the learning state with which we generally associate. I think Long Time Reader's description of a roller coaster ride as apt. I often reflect on these stories/images to help me find patience and understanding when dealing with Dad.

Anonymous said...

Peace and love to you and your family as well during this holiday season, FSP. Thank you for sharing something that is very personal and close to your heart, as painful as it is.

Requin said...

This all sounds very familiar to me, as my parents and I went through this with more than one of my grandparents. My mother was good at being able to 'live in the moment' and focus on how her father or MIL was doing right then, and that they would know that they had been comforted or felt happy that people were visiting, even if they didn't necessarily remember all (or any) or the details later. Your plan to find gifts that will be pleasing regardless of who gave them is a good one.

Anonymous said...

This post brought a tear to my eye, reminding me that this will be the first Christmas without my sweet 95-year-old maternal grandmother, who died in the fall. She remained remarkably alert until the very end, remembering not only her 5 children and 20-something grandchildren, but her eleventy!! great and great-great grandchildren as well. Staying intellectually active has been shown to stave off dementia, although it's no guarantee, of course. She played bridge multiple times a week with several different groups up until she had to be hospitalized a few months before she died.

On the other hand, my paternal grandmother went through significant dementia before she died. She had struggled with mental illness (undiagnosed but pretty obvious) all of her life, and the dementia was actually good for her. Once she got into a nice care facility, she was as happy as could be. After believing she was allergic to almost everything all of her life, she would sneak to the kitchen in the care facility and eat pudding cup after pudding cup in the middle of the night. She had her struggles, but the forgetting was good for her.

Since old age and its accompanying ailments are in the future for all of us, it is both interesting and distressing to watch our elders. Dementia is like any other mental illness, it's not your fault, nor is it your mothers fault. Although it is robbing her of her memories, it shouldn't diminish the experiences you've had with her in the past. And even if she forgets, you should not forget how much she loved you and you loved her.

studyzone said...

I can really relate to your post. My parents, while still young-ish (I'm under 40) are both experiencing a serious health issues that have me questioning my priorities. I'm on the job market now. If I can't find a tenure-track position within reasonable driving distance of them, should I forgo the TT career and find an alternative career closer to home, so I can be there when the inevitable happens? I feel torn. My dad's mom passed away four months after a head injury - in the time between the injury and her death, she did not know who dad was, and was always very angry when she saw him (or my sister and I). Dad is an only child, and was obviously distressed by this. As he remarked at her funeral, the woman he knew as his beloved mother died when she suffered the head trauma, not when her heart stopped beating. It's a hard thing for any child to deal with. I'm not looking forward to it.

Susan said...

Thanks for your post, FSP, I am dealing with a difficult family-member illness as well right now.

Several years ago we lost my grandmother to a very extended dementia -- her body just kept on plugging! -- which was a very long and saddening experience, with similar epiphanies along the way. I do wish I had gotten to know her better as a real adult, but maybe the rose glasses of childhood are a better way to leave it be.

Colleen said...

Re: anonymous, there is a "cognitive reserve" theory that some people with neurological symptoms of dementia (plaques and tangles) develop symptoms later than predicted because they have intellectually "exercised" their brain "muscle" and this helps inoculate against the mental atrophy that occurs in dementia.

Anne-sophie, I worry that same thing about my own mother. She is pretty socially active but a recent increase in caregiving responsibilities for her sister and BIL has affected her stress and her memory.

FSP, there are some great forums on for children/caregivers of people with AD. You'll find on there that your issues are almost universal to children with AD parents. Confabulations/delusions and acting out against family members are really common problems in the early stages. One thing to remember is that though her relationship to you will change due to the disease, somewhere deep down she will always have a daughter who means something to her, even if she forgets that person is you. Her outward perception of you may degrade but there are deeper memories that stay intact much longer (and sometimes pop up in interesting ways later in the game).

another post doc away said...

I'm sorry you are experiencing this with your mother.

I too am living not close to my parents and I too had a hurtful conversation with their family GP... "move back and be dutiful daughter" was the term. But my brother and the rest of our family live close by my parents... alas, it's on me?!

Anonymous said...

Sorry to hear about this - I do not look forward to dealing with aging parents (especially my husband's mom because she lives alone and my husband is an only child).

Thanks for sharing your experiences and struggles, it is good to know what things could be like to mentally prepare.

Good luck dealing with this over the holidays and in the future as well.

iGrrrl said...

And one dark/ironic humor story (of which I'm sure you hear many): A friend was going through the same issues with her mother. When I asked one day how it was going she said, "She usually thinks I'm her younger sister. I don't know if she remembers she has a daughter." "That must be tough." "Well, at least I'm somebody she likes!"

Wishing you the best, and that you have whatever you need to get through the tougher days.

Anonymous said...

Will be thinking of you. Best wishes.

DrDoyenne said...

Dealing with elderly parents is something most of us have to face eventually, but being geographically separated makes it much more difficult.

My father suffered a form of dementia near the end (his short-term memory was a wreck, but long-term was mostly intact). He could not remember what happened an hour earlier, but could vividly recall things he saw and did seventy years ago. He was extremely distressed over his mental state, being aware that something was very wrong. In talking with him during visits, I focused on the old memories and avoided recent events that he could not remember. I learned a lot of things about him (and other relatives) during those talks that I had not known before.

Both of my parents are deceased now, but I naturally think about them more often at this time of year. However, I try to focus on the good times, rather than the bad. Enjoy your parents while you can (and contribute to the good memories).

Rather than a downer, this post has inspired me to muse a bit on the topic (memory) myself.

RJ said...

I can't recommend too highly the book "Contented Dementia". It's well written, and while the approach may gib with some - broadly you accept their reality and work to maintain their feeling of wellbeing rather than insisting on the truth of the situation.

Female Computer Scientist said...

I'm really sorry you're going through this, FSP.

I went through a declining health situation with a parent, and it was extremely difficult. There was this strange transition from being just their child to being both their child and their parent simultaneously, and I was never really sure how to navigate it.

I hope your next few weeks are as peaceful as possible.

Anonymous said...

My heart goes out to you, FSP. I have close family members with neurological issues and it is very difficult.

Dealing with ill family members is a huge issue for those who are doing it. In academia, we can feel like we are not supposed to have these "distractions." Thank you for bringing it out in the open.

Anonymous said...

Since my Mom passed away I've been trying to phone my Dad more frequently and visit at least once a year. He is still going strong at 85, and I hope things continue that way for another decade, but there probably will come a time when he can't care for himself any more.

ScientistMother said...

I'm so sorry FSP. I've noticed this with both grandparents and parents. It is so difficult

EuropeanFemaleScienceProfessor said...

Thank you for the post - sorry you are having to deal with it, too. It is so hard to see a parent who used to be bright and sharp slide slowly down the path to dementia.

It got to the point where my mother was talking about the people who lived in the mirror, and she was put in a "Memory Care Unit". She does not know my name anymore, I pretend that she recognizes that she knows me, but I'm not sure she does. She's physically fit, will probably live another 20 years, but I'm so sad that she is not able to see and enjoy her grandkids growing up.
Take care, and survive the family holidays!

Reed said...

Very sorry to hear your news. I have been through this with my parents (both now deceased) as well as other older family members.

Let me share one suggestion from my experiences when, after my father died, my mother's dementia/memory loss began to get worse. We began to give mom small photo albums in which each photo was clearly labeled. And not just "us at the zoo," but more like "Your daughter Polly, her son Tom (age 12) and his friend Huck at the St. Louis Zoo. July, 2005."

Mom loved getting these, and it gave us something to talk about either on the phone or in person. It also helped mom and her caregivers discuss the family, and also provoked pleasant memories of family events from the past.

You could do actual photo albums (be sure to get the ones with space for writing captions) or or something like Macintosh iBooks or Shutterfly albums.

I also like to research our family history, and I often brought older, unlabeled photos from the family collection on my visits to mom. She seemed to enjoy talking about the people in the photos and the events from years past. (And it helped me capture some interesting family stories before the memories vanished.)

Best wishes for the holidays and the years to come to you and all your family.

Anonymous said...

FSP, try not to guilt about being far away. We moved back from a long way away to be near family going through these issues several years ago, and its frankly very very very hard. You think being there will make it easier, but it doesnt. It is rather like the thoughts we all had about how we would manage when children came along - we were so far away from the reality. Moving to be closer is stressful, and should be considered very carefully, particularly if it involves giving up a job you love at an institution you love and respect to go somewhere that isnt your ideal without the resources you are able to obtain elsewhere. Job frustration coupled with day to day family care and parental care are an immense strain. I am not even sure that our parents (as they were as opposed to how they are now) would have wanted us to do this. It is definitely not a decision to take lightly, and we may yet decide to undo it. I wouldnt want my children to.

Unknown said...

I guess at some point all of us has to deal with our parents' health deterioration and it is a sad thing. But I think in some ways you are still lucky because you still have time to spend with her, despite it being challenging as it is. It's better than losing them suddenly, especially if you are not ready yet.

Anonymous said...

This is not quite the same situation, but it depresses me that my mother's first and repeated reaction on me receiving tenure as a female professor was: "Great, so that means you will be staying in town X?" To complete the story I should mention that I live in Europe but I spent two years in the US as a postdoc, which was a serious problem for my mother. She wants me around (I am the only child). Now I received tenure in a city, which is just two hours away from my parents home. My mother of course loves this, because we see each other on a regular basis (and not just once a year as it used to be while I lived in the States). I allways try to tell her that tenure does not necessarily mean "staying forever" but she won't listen - actually my husband and I are searching for positions in the US. I am not sure if my mother would ever forgive me if we would move, but should I not move just to keep her happy and instead lose the chance to live the life we want? These things are not becoming easier when parents are getting older and - as you just said - get serios health problems. It was easy to leave when I was a postdoc. But now I feel like I would leave my aging parents alone with their potential health problems if I would go back to the US....especially since I have already a secured job two hours away from their home. I know that I have to free my mind and just take the opportunities that arise (i.e. take a professorship in the US if I get an offer) but its also heart breaking at the same time (...besides the fact that my mother seems to be mostly happy about my tenure, because she hopes I stay close forever). Anyone with similar experiences?

Zuska said...

Your post was beautiful, FSP. Everyone thinks that aging and dealing with aging parents is terrifying - and it is - but it can also be something uniquely beautiful and sweet. I've had some of the most complete experiences of happiness in my life spending time with mom in the AL home or with my FIL in the waiting room of a doctor's office. The closeness I've developed with mom and with my in-laws is so much more incredibly intense and intimate than it was before. Aging may not be gorgeous and hot, but it doesn't have to be ugly, if there is love and intimacy. My mom is terrified of developing Alzheimer's - and she sees that her memory is not as good as it was before. She tells me "if I ever get like that [like others in the AL home with Alzheimer's] don't come see me. Just shoot me." And I always tell her the same thing: "They can't communicate with you, but you don't know how much of what you say that they still understand. Or how comforting it might be to them to feel a hand on their hand, just to have someone sit and talk to them. If you ever get like that, I will come and see you and hold your hand and talk to you, because you may know me and understand me even if you can't tell me so."

I have an aunt in the early stages of Alzheimer's. Last year her husband died and she has not been able to cry. Several times she has said "I feel it here" putting a hand or fist to her chest "but I don't feel it here" touching her eyes. She also once said that she was crying on the inside.

It is heartbreaking to watch someone with a sharp keen mind and wit begin to loose their grasp on those things, to know that they know the loss has started. I think moving closer (emotionally) at this time, not denying the losses, and giving what time of yourself you can, is a great gift.